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Some Comments on Comments, and Also on CCSVI

Posted May 17 2011 12:23am

Earlier today I received the following comment from a reader, in response to my last post which dealt with the Merck Serono "kickback" lawsuit ( click here ):

"I find it ironic that you can talk about big pharmaceutical companies acting badly when you yourself are acting badly. Twice I have posted about my ccsvi experience, and because it was not positive you have not posted it. It has not been the answer for me and it will not be the answer for others. This site in part talked me into going for this procedure. This cost me well over $20,000 and did nothing. You are pushing this procedure and not telling the full story of its failures. I know that this will not be published as you are biased and selling this procedure just as a pharmaceutical company was selling rebif. I really thought you were different."

To be honest, at first I was somewhat taken aback by this comment, as I feel that I've always tried to present CCSVI in a rational and evenhanded manner, and have neither dissuaded or persuaded patients to undergo CCSVI treatment. If anything, I've urged caution, often to the chagrin of the fiercest CCSVI advocates, as I feel the science of CCSVI and its treatment are both very much works in progress. I also felt very sorry for the commenter, whose disappointment and rancor is obvious (please, dear readers, don't leave comments disparaging the person who wrote the above comment. Although I completely disagree with the gist of the statement, everyone is perfectly entitled to their opinion).

I then realized that the above statement affords me the opportunity to address just how comments on this blog are handled, and to state clearly and succinctly my feelings on the current state of CCSVI research and treatment.

The blogging platform I use (Google's Blogger) provides a variety of ways with which to deal with comments made on any individual post. The blogger (me) has the choice of moderating all comments (in other words, no comments can be posted without my seeing them first), moderating only comments made on older posts (such as posts more than seven days old), or not moderating comments at all (all comments are posted without my approval on all posts, regardless of when they were initially published).

When I started Wheelchair Kamikaze, I chose to not moderate any comments, as I believe strongly in free speech and welcome any and all opinions that my scribbles might elicit, both positive and negative. The only way we can truly learn and expand our minds is to listen to opposing viewpoints, and indeed many of the comments left on previous posts that did not agree with what I had written have given me much food for thought. As the popularity of this blog has grown, the amount of comments left after each post has grown with it, to the point where I am sometimes unable to address each and every comment left by my readers. I truly feel bad about this, but I do read every comment, and deeply appreciate all who take the time to contribute.

Unfortunately, about six months ago, several spammers started leaving irrelevant comments on dozens upon dozens of blog entries, hawking everything from wheelchairs to CCSVI treatment centers. As I am of the opinion that spammers are among the scum of the earth (not quite as bad as some health insurance or pharmaceutical company executives, but close), and don't want to subject my readers to such garbage, I felt compelled to start moderating all comments left on posts more than one week old. Readers are free to comment on new posts, completely unmoderated, for the first week they are published. After that, I get an e-mail notification of each pending comment, and have the option of publishing or deleting it. As a rule, I publish all comments, as long as they aren't vulgar or abusive, unless they come from spammers. The spam is quickly deleted, an action which delights me to no end.

The only drawback to this system is that occasionally the notification of a pending comment gets caught in my e-mail spam filter, and winds up in my "junk e-mail" folder. Since the junk e-mail folder usually contains nothing but (surprise!) junk, I usually don't bother checking it. Therefore, if any of you try to comment on an older post, and your comment doesn't show up after a day or so, please e-mail me at WheelchairKamikaze@gmail.com and I'll do my best to locate your wayward post. Of course, you can also try submitting the comment again, but if your first attempt got caught in my spam eater, there's a good chance your second attempt will also.

Now, on to CCSVI, a topic which only seems to be getting more controversial by the day. In recent weeks, we've seen a variety of studies released, some supporting the CCSVI hypothesis, and others refuting it. Amongst those supporting it, there have been some that argue for CCSVI as the cause of MS, and others concluding that the vascular abnormalities collectively known as CCSVI are more the result of MS, or perhaps exists as a comorbidity with the disease. Internet forums and Facebook pages devoted to CCSVI have been riven by arguments both for and against, often pitting patient against patient. Unfortunately, hyperbole often rules the day, with each side regularly making claims that simply can't be substantiated by the available science.

Meanwhile, as the scientists and patient advocates duke it out, thousands of desperate MSers are getting CCSVI treatment here in the United States and at various locations around the world. The technique used to treat CCSVI, venoplasty, is a minimally invasive procedure that involves snaking a catheter through a patient's veins to the point of blockage or narrowing, and then ballooning it open (in some increasingly rare cases a stent is used for this purpose). Although the procedure sounds simple enough, there is in fact a steep learning curve involved for the doctors performing it, and there has yet to be standards of practice agreed upon by all specialists. Some interventional radiologists use larger balloons than others, some check more veins, some use stents more frequently than others, and the "aggressiveness" of treatment varies from physician to physician.

Despite the overwhelmingly positive patient reports that flood the Internet, the results of the CCSVI treatment procedure are actually quite mixed. Many patients do indeed find lasting benefit after going through venoplasty, but as is evinced by the reader comment that prompted this post, a sizable number of patients receive no relief at all after CCSVI treatment. Many others find temporary relief, only to face the crushing disappointment of a return of their symptoms when their veins revert back to their blocked or narrowed state (a situation dubbed "restenosis"). Some treated patients have developed blood clots or scarring in their treated veins, situations which are extremely difficult to resolve, and which can effectively shut down the affected vein for good. When reading patient reports on the Internet, or viewing them on YouTube, it's very important to keep in mind that most patients who are treatment "failures" don't make videos or write testimonials. It's simply human nature to shout our triumphs from the hilltops, but to keep quiet about disappointments.

The only thing that anybody can state for sure about CCSVI at this time is very little regarding the topic can be stated for sure. While it does look like there is a correlation between abnormalities in the veins that drain the central nervous system and multiple sclerosis, the question of cause or effect is far from decided. Furthermore, the prevalence of such abnormalities in the healthy population has yet to be properly quantified. Some studies suggest that as many as 25% of the population have venous abnormalities which would qualify for CCSVI, but show absolutely no ill effect. As shocking as it may seem, the human venous system associated with the central nervous system has been so little studied that no reliable definition of "normal" actually exists. Until now, the arteries, responsible for heart attacks and stroke, have received all the attention, leaving venous anatomy largely unexplored.

Further complicating the picture is the relative high cost of the procedure. Patients traveling abroad are typically paying about $10,000 for the procedure alone, without travel expenses figured in. Patients in the US, getting treated domestically, have in large part been finding their treatment covered by private health insurance. Unfortunately, that situation seems to be changing, as one of the major private insurers has started to reject CCSVI treatment claims, and there are reports that Medicare is now also refusing to pay for the procedure. Given the high rate of restenosis, and the wide disparity in treatment outcomes, patients need to seriously consider whether waiting for both the CCSVI science and treatment procedure to mature may be in their best interest, especially if they will be paying out-of-pocket.

My personal opinion is that MS is a very complicated beast, and in fact may not be one disease at all, but a collection of related maladies that share common symptoms and diagnostic criteria. The causative factors of MS very likely differ significantly from patient to patient, and almost certainly include genetic predisposition, infectious factors, toxins, and, in some cases, vascular abnormalities. Just as none of the existing MS drugs works on every MS patient, so too the impact of CCSVI will almost certainly vary from patient to patient. For some patients, CCSVI may be THE predominant factor in their disease. In others, the condition may play no role whatsoever, even if their veins do display abnormalities (remember the high likelihood that some healthy people display similar abnormalities).

As it now stands, each patient must educate themselves as fully as possible, and honestly assess the risk/benefit equation for their own particular situation, trying their best to understand the existing realities despite the fog created by conflicting media reports and Internet hyperbole. One of the best ways to do this is to listen to the researchers exploring CCSVI, and the doctors performing the CCSVI treatment procedure. Thanks to the magic of the Internet, patients can do just that. Recently, the scientists at the Buffalo Neuroimaging Analysis Center held a town hall meeting during which they detailed the findings of their ongoing CCSVI studies. Videos of the presentations given are now available on the BNAC website ( click here ). The Hubbard Foundation, another organization actively researching CCSVI and organizing CCSVI treatment trials, also recently put on a patient education forum, the videos of which can be accessed ( here ). Both sets of videos should be required viewing for anyone interested in CCSVI.

I'll leave you with a video interview, conducted by the CCSVI Alliance, with one of the most experienced CCSVI treatment practitioners, Dr. Gary Siskin. Dr. Siskin's insights and advice are invaluable, and his sober approach to CCSVI is necessary and refreshing. As Dr. Siskin says at the end of his interview, "Anybody who says they know everything about CCSVI is probably not telling you the truth, because the level of knowledge just hasn't gotten there yet…"

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